Tuesday, June 29, 2010

All we wanted was a feeding tube

Almost two months ago we came into the hospital for what I thought was going to be a simple procedure.I thought we would be in the hospital for two weeks top while he was healing from his g-tube surgery.Boy was I wrong.During these two months Brady has had:
-enlarged liver
-elevated liver enzymes
-low blood sugar that required emergency shots to bring it back up
-MRI to make sure he didn't have a brain tumor
-a new diagnosis 
Congenital Disorders of Glycosylation

-uncontrollable seizures they he has all day and night

-can't tolerate his feedings

-muscle biopsy that came back abnormal

-Probably more but that's all I can think of right now

As you can see Brady has had a tough time.I think he is basically over the hospital.I am too.It's been a long time and I'm not sure I see an end in sight.I just want him to get better.I want my happy baby back.It's hard seeing him miserable.

Thursday, June 3, 2010

Long Month in Hospital

Brady has been in the hospital for exactly one month tomorrow.He got his feeding tube but he is not tolerating it well.They are also worried about his elevated liver enzymes and his enlarged liver.His blood sugar also keeps dropping.One top of everything that is going on his growth hormone test came back too high and they can't explain it.It's just been a long month.